2024-08-12T17:07:32-04:00 2023-12-31 208342587 Michael Terpening CPA 5629 Figarden Dr Ste 101 Fresno CA 93722 990 2023-01-01 842748218 KCNT1 SLACK EPILEPSY FOUNDATION INC KCNT 32531 N Scottsdale Rd 105-530 Scottsdale AZ 85266 Justin West President 9492689771 2024-07-23 false true Michael Terpening CPA P00369645 5592996686 2024-08-12 X 2023 2024-08-08 14:25:15Z KCNT1 SLACK EPILEPSY FOUNDATIO 364257 false X X 2019 NH Mission: KCNT1 Epilepsy Foundation accelerates the development of better treatments for KCNT1-related epilepsy and a cure by awarding pilot grants, funding research, making research assets available to qualified scientists and clinicians and organizing the community 9 8 0 0 0 176450 357578 0 6679 0 176450 364257 12500 20500 0 0 0 10321 28683 101048 41183 121548 135267 242709 262430 505139 0 262430 505139 Mission: KCNT1 Epilepsy Foundation accelerates the development of better treatments for KCNT1-related epilepsy and a cure by awarding pilot grants, funding research, making research assets available to qualified scientists and clinicians and organizing the community false false 82228 20500 357578 Launched a longitudinal patient registry study; Recruited participants for a study using the Citizen Health platform; launched biobank with blood and tissue samples and developed an iPSC line; designed and obtained IRB approval for an observational study on a repurposed drug; Co-funded a grant with another nonprofit at the University of Vermont; granted support to the University of South Australia for an allele-specific drug repurposing study; Hired part-time contractors: one managed our biobank, conducted Conceptual Model studies, and performed landscape analyses; the other, with expertise in neurobiology and clinical trials, overseeing research collaborations, establishing grant processes, and exploring new research avenues. Also, we expanded patient support initiatives, organizing small family meetups at blood collection sites and epilepsy conferences, giving families the opportunity to engage directly with KCNT1 drug developers for the first time. . We also launched a Parent Support Network, offering scholarships for parent training on peer support. 82228 true true false false false false false false false false false false false false false false false false false false false true false false false false false true false false false false false false false false false false false false false false false false false false false false true 4 0 false 0 false false false false false false false false false false false false false false false false false X 9 8 false false false false false false false true true false false true true true true true false false false false false NH X Sarah Drislane 9492689770 32531 N Scottsdale Rd Ste 105-530 Scottsdale AZ 85266 X Jason J Kaufman Director 0.25 0.00 X 0 0 0 Owen Billman Chairman 3.00 0.00 X 0 0 0 Morrisette Royster Director 0.25 0.00 X 0 0 0 Sarah Drislane Executive Director 20.00 0.00 X 0 0 0 Joseph Riculli Director 0.25 0.00 X 0 0 0 Margot Goodkin Secretary 0.25 0.00 X 0 0 0 Justin West President 10.00 0.00 X 0 0 0 Samantha MacMechan Vice Chair 0.25 0.00 X 0 0 0 Norman Metcalfe Treasurer 2.00 0.00 X 0 0 0 0 0 0 0 false false false 357578 357578 6679 6679 364257 6679 0 0 X 12500 12500 8000 8000 599 599 1850 1850 4440 4440 11698 11698 2211 200 2011 4147 4147 11612 10283 1329 11705 485 899 10321 1595 1595 Taxes and Registration 225 225 Telephone 206 206 Research and treatment 21581 21581 Registry and biobank 17662 17662 11517 11517 121548 82228 28999 10321 262430 505139 262430 505139 0 0 X 262430 505139 262430 505139 262430 505139 242709 0 X false false false X 30941 81829 176451 357578 646799 30941 81829 176451 357578 646799 57319 589480 6679 6679 653478 0.90210 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED East Asia and the Pacific Epilepsy Research 8000 Bank Transfer true false false false false false true Cure Epilepsy PO Box 10572 Chicago IL 60610 364253176 501c3 12500 1 Monitoring procedures (Part I, line 2) Both technical and financial reports are required throughout the grant period to assist in monitoring. At the grant periods end, a project summary and financial report is required to ensure funds are used appropriately. Form 990 governing body review Part VI line 11 A copy of the 990 is provided to the board of directors for review and approval prior to filing the return Officer director etc mailing address Part VI line 9 Officers and directors can be contacted at the organizations mailing address Conflict of interest policy compliance Part VI line 12c The organization has a conflict of interest policy Governing documents etc available to public Part VI line 19 Available upon request List of other expenses Part IX line 24e Patient support, education and CRM Database